Fibromyalgia may be the quintessential pain disease but level of pain found in chronic fatigue syndrome is no joke, either. An ongoing CDC study indicated that people with ME/CFS experience the same level of pain as people with chronic pelvic pain and more pain than people with multiple sclerosis and muscular dystrophy. Eighty percent of ME/CFS patients suffered from pain in the past week.

In fact, a recent study suggesting ME/CFS patients in high levels of pain tend benefit much less from pacing and coping strategies that help other patients, suggested the pain in ME/CFS may be significant than we realize. All the better, then, that researchers are looking at what really works with pain in FM(ME/CFS).

This study, long overdue, looked at whether the traditional way of treating pain – opioids – is effective in fibromyalgia. About 30% of people with FM use opioids to reduce their pain (a ratio similar to other pain disorders) and earlier surveys have suggested patients considered them more effective than other pain drugs.

Some factors, suggest, however, that opioids might not be a good fit for FM; one study found that the opioid receptors in the brains of FM patients were already be ‘filled, suggesting that adding opioids wouldn’t help much, and that paradoxically, going off them might help relieve pain. Opioids also target pathways in the brain (opioid pathways) that don’t appear to play a major role in Fibromyalgia.

Take the Opioid Effectiveness Survey at the bottom of the page

The Study

This study assessed pain, functional status, quality of life (Fibromyalgia Impact Questionnaire), mood and catastrophizing and opioid effectiveness in fibromyalgia patients attending a Canadian pain clinic over two years.

Results

Most FM patients were taking moderate doses of opioids with about 2/3rds of patients on stronger (eg oxycodone) and 1/3rd on less strong (tramadol, codeine) opioids.

That all the FM patients in the study, whether on opioids or not, tended to have less pain, improved mood and better functionality over time, spoke to the benefits of getting treatment at a good clinic. The only significant effect opioids, by themselves had, however, was a small increase in physical functioning. Patients on opioids, on the other hand, were in more severe pain, were more functionally impaired, more likely to be on disability and were twice as likely not to be employed….They were not a happy group.

The authors stated

The findings of this open observational study raise questions and concerns regarding the rational use of opioid treatments in FM patients.

The FM patients on opioids were worse off in many ways than those not on them but it wasn’t possible to say why.

This is not to say that opioids don’t have their place; 44% of FM patients rated Tramadol ‘helpful’, 75% rated hydrocodone ‘helpful’ and 67% oxycodone in a 2007 internet survey. The authors noted that opioids are the best available treatment for short-term pain of any kind but raised questions about long term use. In chronic disorders, prescription drug use, of course, tends to be ‘chronic’ ; ie long lasting and that’s a different ballgame entirely.

Not surprisingly, the FM patients on opioids tended to be in worse shape when they entered the clinic; they were in more pain, less functional and more depressed when the study started. More depression and less functionality is expected with higher pain levels but the opioids didn’t appear to help them that much; despite taking opioids the FM patients on opioids still had higher pain levels and were less functional that FM patients who weren’t taking them.

The high level of pain experienced by FM patients even after opioid treatment raised the question whether opioids could be increasing instead of decreasing pain rather through a process called ‘opioid-induced hyperalgesia’.

Push-Back: Opioid Induced Pain

Opioid-induced hyperalgesia or increased pain sensitivity due to opioids is a well-known phenomena. Believed to be caused by neural remodeling of the pain producing pathways, it leads to the same state, ironically – central sensitization – believed to play a role in FM and perhaps chronic fatigue syndrome (ME/CFS). Intriguingly, the glutamergic system, which Marco has been blogging about in ME/CFS, appears to be the chief culprit in opioid induced pain sensitization.

Warning signs of opioid induced hyperalgesia include

your pain getting worse while other FM/ME/CFS symptoms remain stable

the appearance of ‘diffuse allodynia'; ie parts of body which become painful to the touch

Pain that increase instead of decrease as you increase your dosage of opioid drugs

Other Potential Side Effects

A 2011 study by the same authors found that opioid use in fibromyalgia patients was more commonly associated with a raft of negative outcomes including higher levels of unemployment, more disability, unstable psychiatric status, a history of substance abuse, and previous suicide attempts. Since patients taking opioids tend to be in more pain, it’s not clear what role if any, opioids playing in the these more negative outcomes. It is clear, though, that opioids were not particularly effective in relieving their symptoms.

Long term Use of Opioids Effective for a Minority

It’s pretty, clear, though, that opioids work much better when used for shorter periods of time.

More people are taking opioids for chronic pain than ever but study evidence suggests they’re simply not very effective at reducing chronic pain. A 2013 review

“the recent increase in the number of patients taking opioids chronically for pain has not yielded the expected benefits in reduction of symptoms and improved function. Chronic pain patients typically respond well initially to opioid medications, but regular use is associated with adverse psychological and physical effects”

For many people there are no easy answers for chronic pain

A 2011 Cochrane review of opioid use in osteoarthritis (4 weeks) concluded that the small to moderate beneficial effects of opioid use were outweighed by the high risk of adverse events. Long term opioid use in back injury did result in increased functioning or pain but only in 16 and 27% of patients. Another study finding that patients taken off opioids and given other pain treatments had higher improvements in pain than patients not originally on opioids, suggested that the best thing some patients might do is just get off them.

A Cochrane overview of opioid use in rheumatoid arthritis found no difference between opioids and placebo. My reading of one review suggested the authors believed that opioids were often functioning as a placebo when used chronically.

Take the Opioid Effectiveness Survey at the bottom of the page

Chronic opioid therapy may be more usefully regarded as a form of comfort care, reserved for those patients who have exhausted other treatments and prospects of recovery. Krashin et. al. 2013

Chronic opioid use can also pack a wallop. A literature review indicated chronic opioid use is associated with constipation, sleep-disordered breathing, fractures, hypothalamic-pituitary-adrenal dysregulation, and overdose and that gaps remain in our knowledge.

This is not to say that there are better alternatives or that that chronic opioid use is not helpful for some but the studies indicate opioids are not effective for many. After noting that opioid use was associated with moderate severe/severe pain, poor health, low employment, and low quality of life, the authors of one population study stated

“It is remarkable that opioid treatment of long-term chronic non-cancer pain does not seem to fulfill any of the key outcome treatment goals: pain relief, improved quality of life and improved functional capacity”

Much More Work on Pain Relief Needed

An ME/CFS patient, Jennie Spotila, speaking at the FDA Stakeholders Meeting for Chronic Fatigue Syndrome, noted that her ongoing problems attempting to find relief from unremitting pain included had taking what sounded like dozens of medications some of which worked for a time and then didn’t.

The truth is that most pain treatments are effective for a relatively small number of patients. The National Pain Summit in Australia asserted that with 90% of Australians with chronic pain suffering from under treatment of pain, relieving pain was ‘the developed world’s largest “undiscovered” health priority’. They noted that most pain management advocacy has been funded by opioid manufacturers and, not surprisingly, tends to focus on better access to opioids.

Fibromyalgia Clinical Trials Currently or Soon Underway

If long term opioid use is not the answer many people with FM/ME/CFS are looking for what might be? The clinical trials underway on fibromyalgia indicate a variety of approaches – from relaxation/mind/body to experimental drugs – are being studied. Bear in mind that fibromyalgia doesn’t get alot of funding and the ‘breakthrough’ in FM pain may come from studies done elsewhere.

Do you mean there are some opioids not on the list that you’ve used? I cannot find a way to add an ‘other’ option to the survey. If there are some opioids that aren’t on the list can you tell me what they are and I’ll put them in. I think the survey is working now.

Tee hee!!! No, I meant I’ve only tried two. The rest do not give a “I haven’t taken this” option. I have to respond whether the medication worked or not. I can’t give a meaningful answer if I didn’t take the med.

Someone I knew some years back dealt with Fitzcharles. At the time, at least, that doctor did not seem to be very sympathetic to people with pain that is basically unexplainable. As far as opioids go, I took some for many years and at the beginning, I had relief and it gave me some long-lost energy (some long-acting, plus for breakthrough). But my doctor – and unfortunately one cannot change doctors in Québec because it is nearly even impossible to get one if you don’t have one – was not very knowledgeable and did not understand that weather factors caused periods of acute pain, so I quit the long-acting and asked for more of the short-acting. Then he left me on that same dosage for 12 years, even when I asked for 10 more pills per month (Dilaudid 1 mg).

The gastro to end all gastros – four days of going both ways – just put me in withdrawal of everything and I decided to quit, except for my sleep meds because of restless legs. Suffering 24/24 is not funny, not getting decent sleep even with sleep meds because the pain just wakes you would have brought me down if I wasn’t the type of person who is really good at distracting herself. I don’t know for how long, though.

Tramadol is a pain reliever and is not a controlled substance like opiates are. It does work on opitate receptors but (to my knowledge) is not considered an opiate. It has other properties that works on serotonin, dopamine and norepinephrine and also works on NMDA which is associated with glutamate balance. It has been used in people that normal SSRI’s or SNRI’s have not been effective for. Therefore, can have a very stabilizing effect for some. It can however, stop being effective and some will increase the amount to have results with it. There is however, another way to avoid having to increase it and have it to continue to be effective —if you keep the dose low and take just enough to somewhat “help” with pain or other issues —then it’s easy to discontinue it for awhile and then when you restart it – it works again at a lower dose.

It has been one of my best HyperPOTS meds to date. It has a very calming effect and helps with tachycardia. It for sure has some properties that help in more ways then just for pain relief. I take a very low amount and discontinue it for weeks at a time to reboot it’s affect. I’ve not gotten addicted to it and am very careful to pay attention to when it stops working and needs to be discontinued and then restarted to have it work again.

Tramadol is one of the pain meds that is acceptable for people with MCAS. There are many things that we are not supposed to take because it will cause a mast cell reaction. There are people who have EDS that use Tramadol. (I also wonder if we truly have FMS when we have EDS. My FMS DX came before my EDS DX.) I don’t do well on other types of pain meds. I’m not supposed to use NSAIDS because of kidney issues. And the other type of RX pain meds – I don’t tolerate well. When I’ve had surgeries there is one stronger med that I can take, but it’s not an opioid. I can’t use it for very long as it starts to backfire with me.

I just filled out the survey, though I wish it would have had a blank for other comments. I filled it out though I haven’t taken opioids for my chronic pain per se–BECAUSE every time I’ve been given them for post surgery pain, it’s been a terrible mistake to take them. They always make me feel much, much worse: I often pass out from very small doses, lose balance, experience extreme nausea etc. It’s been so bad that I refused them when in the ER with acute gall bladder pain (which ended in emergency surgery of a “very sick” gall bladder) and after a three-hour hysterectomy (one of the most involved and difficult my very experienced surgeon had done). I have listed all of the opioids and the synthetics (like tramadol) as “allergies” on my medical information, because I want nothing to do with them.

I’ve also recently given up on taking Advil for my ME and FM pain, to see if my severe headaches might actually be medication rebound caused or worsened. Also, I read (probably in Health Rising) that ibuprophen might exacerbate gut permeability, which I suspect may be central to many of my problems. The jury is still out on whether not taking Advil is helpful or not, and I’ve been sorely tempted to take it on occasion because it does help some with the muscle pain.

Not sure this information will be helpful to you, but I thought I should clarify the meaning of my rather skewed looking survey submission!

In the beginning when I got sick in CFS I two times tried codein and paracetamol to my migraine (can’t use any of the usual migraine-medicines because I get bad side effects to almost every kind of drug). Every time I took codaine I passed out after 10-15 minutes and I fell in a very deep sleep for 4-5 hours and then my legs became very weak for several days after taking them. Although I remembered (this was about 10 years ago) I got some painrelief, but the passing-out thing and the weakness were so scary.

I am studying tai chi and qigong and have been for many years when able to do it..in time chi becomes the energy to move the body as opposed to muscles..now my energy is higher without using my body’s energy and i dont become weak as easily..and my pain has decreased greatly..recently i learned a special shaolin qigong and the improvement is remarkable..i am 75 and do not remember a time when i was not sick most of the time until last year when i added this new qigong to my life…i love this site…it is great support..thank you

So great to hear about you practicing qigong. For the first time I hear about shaolin qigong and that’s why I write to you. It’s a little bit funny, yesterday I started for the first time in my life learning qigong. It is called smile qigong and developed from two ex-sufferers of CFS. I am really excited about this. But this shaolin qigong I also find interesting and have been watching on youtube. Do you go to a class or do you know if it is possible to order a dvd with shaolin qigong from somewhere?

Whether of not to use opioids is such a complex question to me that I really couldn’t fill out the survey. For instance, during the day my pain level is usually much lower than it is by the evening, so maybe 2 most days, and a 6 most nights. On bad days, both numbers are higher. This wasn’t the case the first 2 years of my illness (’78 – ’80) when it was always high. I was allergic or had adverse reactions to wimpier pain meds so I wasn’t taking anything other than Bufferin and I had to quit taking that after my tinnitus became intolerable. I would have given anything to at least try something stronger, but at that time I had no DX and no doctor who understood how much pain I was in. I was close to suicide at that point. I have a hard time believing that opioids wouldn’t have helped and it makes me nervous that doctors could read these reports and think that since they aren’t effective that they’ll refuse to prescribe an opiate to a patient who could truly benefit from one. Sleep issues were equally as problematic, but after I was DX I felt like a guinea pig, trying everything on the market, both OTC and prescription for sleep, only to have reaction after reaction to everything tried. Some didn’t cause side effects. They just didn’t work at all, especially after a couple of months. Myoclonus entered the picture and complicated matters further. Anyway, it turned out that the ONLY thing that has helped my sleep problems and nightly pain is the combo of one 500/50 hydrocodone before bedtime and a Xanax. I also take my cal/mag tablets at bedtime so have no idea if that helps as well or not. If I’m having a very bad pain day, I’ll take a hydrocodone during the day as well (script is written for 2 daily) but I only take it if the pain is really bad and it really does help take the edge off. I can’t tolerate a higher dosage due to the side effects and haven’t felt the need to take more, so there hasn’t seemed to be a downside to long-term use in my case. Interesting article, though, as always so thanks again.

Opiods are the only thing that have made my life bearable for the past 15 years. The pendulum is swinging again against there use as a backlash from the liberalization of use that occurred due to the push to better treat pain in the 00’s. Because pharmaceutical opioids became more available, drug addicts turned to them instead of street drugs, making it appear that there was an increase in drug addiction due to increased prescribing. Take away the pharmaceutical opioids and the addicts will return to heroin.

Because of the current anti-opioid politics, much is made of little findings, such as the “some receptors look like they’re already occupied” finding which is turned into an excuse to not prescribe the most effective, and yes, safest, pain medications that exist.

No, opioids don’t work for everyone, and doctors need to understand how to prescribe them. The whole “opioid induced hyperalgesia” thing is overblown as well. Not convinced I ever saw a case when I was practicing pain medicine.

I think perhaps you mean some studies don’t suggest they’re very effective in some types of chronic pain? But, of course, there are also just as many studies that suggest they are effective for those very same types of pain. Given the polarization in the pain management field regarding opioids at the moment, the one thing everyone agrees on is that there simply is not that much good research available to say definitively one way or the other. Unless, that is, one is a member of PROP (“Physicians for Responsible Opioid Prescribing”), in which case, the evidence is overwhelmingly in favor of launching a self-righteous crusade against opioids.

I’m a bit confused about the significance of the study under discussion in this blog post. Its findings do not appear to be particularly new, aside from its 2-year longitudinal nature. It does not appear to be explaining a novel mechanism of opioid ineffectiveness in FM. There was no randomization. And they study also appears to make logical fallacies that are, unfortunately, all too common in medical research including Argumentum ad Ignoratum – absence of evidence is evidence of absence (“we have no evidence that the addition of these agents to the standard care received in a multidisciplinary pain clinic improved disease status or function”) and cum hoc, ergo propter hoc — correlation equals causation (“We have examined the effect of opioid treatments in patients diagnosed with FM…[and] opioid users had poorer symptoms and functional and occupational status compared to nonusers…and [opioids] may even have contributed to a less favourable outcome”).* Even the study authors acknowledge this weakness by noting that the opioid patients were sicker and had more co-morbidities than those not taking opioids and therefore, probably had more severe pain that required more intensive treatment. One could argue that the opioids may have kept functional capacity from declining — or even that their poor functional capacity may be the result of not enough opioid treatment, something increasingly likely as more clinicians become skittish about adequate opioid dosing.

The main problem with their whole line of thought is that they seem to misunderstand (or are just plain opposed to?) the concept of palliative care. We do not have an agreed upon understanding of the pathophysiology of FM. We have no treatments for that hitherto mysterious pathophysiology. Therefore all we can do is treat the symptoms, i.e. provide palliative care. Sometimes that is enough to improve functional capacity (see Lynn Matallana at NFA). Sometimes it simply reduces gratuitous suffering.

Moreover, we have no objective way of distinguishing (if indeed there’s distinction to made) FM from ME/CFS, where pain is occurring that may well be different and/or (as is the case for 70% of ME/CFS patients) in addition to FM pain. And then there are the recent reports (I’ve seen two in the past six months on Co-Cure) suggesting that perhaps 40% of FM patients may have small fiber neuropathy. Is it any wonder, then, that FM patients respond so very differently to so many different medications? If the 30/50 rule applies to Lyrica and Cymbalta, why would that not be the case with opioids in FM considering its heterogenity?

With all due respect to Dr. Claw, I would again point out that only some studies suggest that only some FM patients will not respond well to opioids. There are so few studies of this disease (and even few good studies) and so much heterogenity that no one can say anything definitively aside from FM patients are in a hell of a lot of pain. And the fact that so many of them find opioids helpful suggests that clinicians should pay attention that. Not rush to write the Vicodin or OxyCotin script so they can move on to the next patient. But listen, experiment, and figure out what is going to best improve that patient’s quality of life until there is a way to treat the underlying disease.

*For a discussion of logical fallacies in medical research, I cannot recommend highly enough this. Indeed every ME/CFS patient (or anybody, really) wanting to read medical research would benefit a great deal from reading the whole series,“Making Sense of Pain Research”. While their focus is on pain rather than ME/CFS specifically, the straightforward explanations of how to read and contextualize medical research are applicable to research of any disease.

Can I just say thankyou thankyou, thankyou for your very accurate ( in my opinion) discussion. I agree entirely with what you have written and I am one who has benefited greatly from narcotic use for the last 16 years. I was initially bed bound with fibromyalgia and I was lucky enough to be diagnosed quite quickly and through lots of experimentation I was commenced on a narcotic patch which did help and even though it did not make me more functional it made my life more bearable. But I had an aversion to narcotics & I was getting pressure from a meditation group I belonged to (that it was interfering with the meditative process and a lot of other things too long and complicated to go into here) so I would every month complain to my GP about coming off the narcotics. Anyway to cut a long story short my GP arranged for me to be seen by a doctor to detox me off the narcotic within three days in hospital, of which I did successfully. ( this happened 6 months after I initially commenced on the medication). I was discharged home on another medication I put under my tongue (a big problem with my fibromyalgia was that I do not tolerate taking medications orally, I had severe nausea and vomiting and reflux that I vomited most things that I ate and I lost nearly half my body weight in the first 4 months) anyway I did not get much benefit from this and by the end of the first week I had to phone the doctor that took me off the medication to say I was in absolute agony and all my symptoms had come back to full severity! This doctor then said something to me I have never forgotten, he said ” I did not want to say anything to you when we first met because you wanted to come off the medication but in his experience with dealing with chronic pain and fibromyalgia patients he has found most of them are under dosed and that because I was at that time a smoker (I gave up over ten years ago) My body was probably metabolizing the drug quicker so he doubled my dose and got me to change the patch every 2nd day instead of every 3rd”.
So I commenced back on the narcotic patches with double the dose and changed it every 2nd day and it made a massive difference for me! Again I did not get a huge functional cure where I could return to my job but the difference it made to the quality of my life was the difference between feeling like it was not worth living to being able to think that I could still have a life.
I am the last person to say that the medication is the only thing that will help, I have had to put in place my own program which I still stick to today over 16 years later. I stick to a strict diet of increased protein and remove sugar and I take inner health to help with gut health and to help the gut and bowel to metabolise the food. The only exercise I could tolerate is walking so I walk…..a lot! I pace myself and organize my life around conserving energy in as many activities as I can. Now it took many years of hard work and sticking to my program but I invested in a business with my partner, this meant I did not have to be there all the time but if I could get to work that would be a bonus. So for the last 4-5 years I have managed to get there every day and I do not need to use the bed we have in the back office very much any more. I still have the symptoms and if I forget to change the patch the symptoms are full on and I still have bad days but I am functional.
Now with all the rubbish going on now with regards to narcotic useage and this political craziness of getting everyone off of narcotic medication I have been refused an increase of dose ( the first increase we have asked for in 16 years) and have been told that I have to be off the medication within two years.
I am now bed bound again and have been since my dose has been lowered, I have had no income for nearly a year, we have had to employ someone to replace me, and we have lost a product distributership. Because I am too unwell with pain and fatigue plus all the other symptoms to sell enough product volume.
So I have been turned from being able to disabled and struggling to get myself in a bath every few days and back to where I am thinking what is the point of life again….no I am not depressed, I am angry and are trying to fight this but this is all based on politics , not evidence based medicine.
So thankyou for writing such a truthful and honest response because I am finding with the research I am doing at the moment that most people are only looking at a couple of findings and taking whatever sides they want to stay on instead of stating the real facts that you have just done.

Tramadol, oxycodone, hydrocodone were all failures for me. It was methadone that treated my pain thoroughly, unequivocally, and inexpensively. Methadone treated every kind of pain I experienced. The bonus was the release of energy I experienced while being totally pain free. I came off methadone, which was ridiculously easy, because Cymbalta became available. That was just a so-so pain reliever and coming off that was a bear — I needed medical help.

My pain reliever of choice now is Lyrica, which is a better than average pain reliever for me but nowhere near methadone. Unfortunately, I need to add an anti-inflammatory. I can tell that coming off Lyrica will be no picnic.

Opoids are not for everyone, but for those who find they work, they should be readily available. It’s a crime that General Practioners are wary of prescribing them. I was very fortunate that a CFS specialist was willing to give methadone a try for me. I wish I had the money to continue seeing him.

Interesting that methadone works for you in the context of what Cort said :

“Intriguingly, the glutamergic system …… appears to be the chief culprit in opioid induced pain sensitization.”

Not only does methadone act on mu-opioid receptors but it also blocks glutamate (NMDA) receptors. Maybe this prevents generalised pain sensitivity developing?

“Methadone exerts its analgesic by acting on the mu-opioid receptor of sensory neurons. Binding to the mu-opioid receptor activates associated G(i) proteins. These subsequently act to inhibit adenylate cyclase, reducing the level of intracellular cAMP. G(i) also activates potassium channels and inactivates calcium channels causing the neuron to hyperpolarize.

The end result is decreased nerve conduction and reduced neurotransmitter release, which blocks the perception of pain signals. Methadone further acts as an antagonist at the NMDA receptor, reducing calcium influx and neuronal excitability.”

I have been with the same doctor since 2007. During our first visit he suggested the combo Aplrazolam(xanax) and Morphine for sleep. Worked like a charm, I was able to get a few hours of sleep. And it still works. All these years I never asked nor did I raise the amount I was prescribed.
So that’s 6 years on Morphine, same dose, I’m allowed 4x 30 mg a day. Mrphine and I lived happily together for 6 years.

Now with the new laws on prescribing class 1 substances into place he wants to get rid of me, or so it feels. He warned he can’t write a prescription that my husband will pick up as we did in the past. I will have to show up in the clinic once a month. This is going to be impossible. I’m one of those severe patients, bedridden and house bound. He knows that very well because when I need to see him he makes a house call. He does not take insurance so that is pricey as your can imagine. Do I now need to ask for a once a month house call a $400 visit? Just to be able to get my prescription?

He advised me to go to a pain clinic. What part of bedridden do they not understand? Pain clinics make you do tests to see if you still qualify for the prescription and in fact the law is now so that even my doc should give me that test before prescribing Morphine. If I have a script for 4 x 30 mg and if my test shows that that amount is not in my blood but lower I will will not get the prescription but a lower one. If it’s higher I also get punished and will be listed as abuser. When he send me those regulations I cried my eyes out. Here I am in the last stage of my life being treated as a criminal and having to stress every freakin month if I will be able to get my script filled. It’s dehumanizing.

I just can’t understand why anyone in a government agency would give a sh*t if I take Morphine or not to make that last stage bearable or not. Is it a wonder so many people commit suicide? I know I’m close because I can’t deal with this anymore. I wish by God that I had HIV/AIDS at least than you are treated like a human being instead of a junk.

Articles like the one above do not help our case. And no I did not fill out the survey being afraid my IP number will be logged and attached to my answers. It will be very easy to trace my IP number to my name and location. I’m sorry Cort.`

I sympathize deeply with Christine. It is not funny to have to deal with dehumanizing bureaucracies when one is ill. Here in Québec, it hasn’t come to what you have to live with, but with the current government, it could happen anytime.

There was a government Commission on dying with dignity here in Québec (dealing, of course, with euthanasia and assisted suicide), and I wrote a paper and also went to present my thoughts on the subject and the final report is supposed to be made public soon. All the pro-life people were very active at the Commission (and since, in the newspapers, etc.) and it is obvious that it is most likely that all that will happen is that circumstances where people are already dying in agony, doctors will not be prosecuted if they add more pain-killing medication which may bring death: one has to remember that there are family members of the dying who think people should suffer to the bitter end. Palliative care was touted as the miracle solution to dying peacefully. Yep! But places in palliative care are rare – some are at a cost too! – and one must have a less than three-month life expectancy to be accepted there.

I have lost a few people to cancer in the past couple of years, and when they were suffering, they told me that they finally understood what it means to be in pain all the time and they were sorry that I have to live with this. To medical people who read this, if any: put that in your pipe and smoke it!

Good luck, Christine. Like you, I won’t answer the survey. Even if Cort has added space for comments, and for many of us, that is a blatant need because there are so many different ways in which we suffer.

Thanks for your reply Josette,
The ironic thing is we DO have Dying With Dignity Act in Oregon in to law. Many people are helped with this. I’m proud that we are one of the states who do make this possible.

It’s that vague space between being too well to die and too ill to go out and take care of what you need. We are lumped together with healthy people who once had a prescription for Hydrocodone and now keep miss-using and abusing it. It’s a Federal case and not a State level case.
Why they are so fixated on people abusing drugs beats me. I would think they have better things to do. If people want to mess up their life, et them. What are they nanny’s?
I was born and raised in the Netherlands under a very liberal recreational drug environment, maybe that is why I just don’t get it. People used drugs recreational and that lead to less crime on the streets, just like you buy hard liquor in a store. People who had a couple of ounces cocaine, weed, marijuana did not get prosecuted. Why bother? They rather went after the larger drug kartels.

When we moved over here I could not believe how much energy was spend on putting people in jail and prosecute them just for having some Marijuana. On the other hand they can easily buy a bottle of Vodka and drink that without getting into trouble. Hypocrisy.

We do have in Oregon the Medical Marijuna Act as well. Yay, right? I got a MM card my doctor suggested it and we got help filling out paperwork. Once you have your card you’re on your own. There is no way to actually get the Marijuana yu need for pain relief of for sleep, or nausea(there are different strains). See the law id that you’re not allowed to buy it. It has to be given to you. We don’t have dispensaries like they have in CA and WA. There are some growers that come together in a place and than you can wait if someone has something that you need. However the rules are that the vets are always served first. Even if they are not that ill but are having PTSD from the Vietnam or Gulf war. I’m more for equal rights especially if there are very ill people like myself or cancer patients.

Besides all this I can not go out each month and sit and wait if I will get something. It’s disgracing. So I’m at home with a MM card but no substance. I don’t smoke it I have a vaporizer that only releases the useful substances. You are allowed to grow about 5-8 plants yourself. But they need to grow indoors which means giving up a bathroom to make that into a hothouse and purchasing all necessary equipment.
And blacking out part of the house, because criminals will drive through neighborhoods and if they see these special lights burning day in and out that’s a reason for a raid. Either by the criminals or the Federal government who does not agree with the MM Act. It’s maddening. Really. On one hand they give you a tool so they can feel good about that and with the other they make it impossible for bedridden and very sick people to use it. This is a country of contradictions.

When I undertook my paper to our Commission on dying with dignity, I studied the law from the Netherlands, from Belgium, and the assisted suicide laws of Oregon – and there was one other state at the time, can’t remember which one. The U.S. laws are so strict that it is no wonder that very few people get to avail themselves of the “service”.

As you do, I get very huffed and puffed when governments interfere with the possibility of sick people to get good pain drugs because there are just too many people out there who want a high, then a better and bigger high and will use anything they can find. Here in Canada, there is another mediatic boom about Oxycontin. I never tried that medication and it seems that there WAS a problem with addiction, but were those getting addicted really people living with constant pain is not certain. Junkies were doing all kinds of things with the Oxy. Now Purdue has come up with Neocontin which the junkies cannot alter as they could Oxy.

As for medical marijuana, your laws are crazy – and so are ours. There is a “legal” medication some people here can get, called “Sativex”, but apparently it is not very efficient in pain control.

I am always amazed at what people will take to get high and now China seems to be a great supplier of constantly new molecules, all greatly dangerous. But when these same people ruin the possibility of getting good pain meds for those who need it, it is disgusting. Sad thing is, these people then go driving and killing people (same happens with booze though) or just go totally psycho!

Christine, I’m so very sorry you’re going through such a horrible time. It truly is ridiculous to be treated like a criminal when all you’re asking for is some relief. I have a new doctor who does NOT make me feel like a junkie so perhaps you could also find a new doctor who would be sympathetic? My last PCP moved out of state but that turned out to be a blessing. He never said anything to me directly about my scripts for Hydrocodone and Xanax, but many of the staff made me feel like an addict with their questions and implications. It truly was dehumanizing and sometimes I’d go home and cry. Drug testing was done often, too, although none had ever revealed that I abused my meds. Had to fill out forms too, asking how long I expected to need a controlled substance etc. Although my case of ME/CFS is obviously not as severe as yours, its still very tough to sit and wait for the doctor, let alone fill out insulting forms. I know this isn’t of much help to you, but just know you’re not alone. It would be wonderful if you could find a new doc. Best of luck and please don’t give up!

I wish that was possible. I applied 3 times now to dr. Peterson’s office to become a new patient but I get no reply whatsoever. I emailed, called and don’t know what else to do. I got the names from doctors after I was contacted by Hemispherx to give Ampligen a try. Dr. Peterson is one of them and the closest to my home state.
My husband and I purchased an RV so we can live a certain time out of state plus with an RV I can lay in bed and travel.
Dr. Bateman in Utah and dr. Klimas do not take on new patients. That leaves dr. Lapp and dr. Enlander for me. Both weeks of travel away. I know dr. Peterson doesn’t take patients just for Ampligen he will decide if that is the right treatment, I’m okay with that if only I could get a reply from someone. it’s frustrating and stressful. Time is running out and temp. moving to another state will take prep work both for me and my husband’s job.

Finding a local GP is even harder. before I found the one I have now I had been send away by I think at least 20 who do not take on chronic patients, it looks bad for their practice numbers. One said that chronic patients are all drug users and only come in to have their scripts filled. Besides that I can not go out and visit a dr. I will get any virus that floats around and I don’t know any other physician who will make house calls. Mine will but it’s expensive. All in all almost as expensive as a month of Ampligen.

If anyone here (Cort?) know the secret trick how to become a dr. P. patient do let me know. I seem to have run out of options.

I’m not sure what part of Oregon you’re in, but if you’re in the Portland area, you might look into Housecall Providers (www.housecallproviders.org). They’ve been my saviors as I can’t get to a clinic on a regular basis. They are also big on palliative care.

I have had contact with Housecall providers before and even thought we had a lengthy email conversation and phone calls they insisted I did not qualify. I took it all the way to their president but the outcome was still negative. Why, I do not know, the reasons they listed was that the service was meant and focussed on older people in the 70-90 range or American vets. Since I was neither I did not qualify.

Maybe they were just full and could fit no more patients in, I don’t know they were really vague. Happy to hear that you got in and that they are making your life easier!

I don’t know if you’re still reading this thread, but I was really puzzled about your experience with Housecall Providers . I don’t know how long ago you spoke with them, but I was talking with my provider last week and she was emphatic that they treat any housebound patient, regardless of age (I was only 38 when they began treating me). There may be a waiting list for your area of Portland, especially as they often have more patients than they have providers for. And generally their primary care providers are nurse practitioners rather than MDs. But then, FNPs are often the best of both worlds — the care of a nurse with the mind of an MD! And the FNPs are trained in pain medicine and licensed to prescribe opioids if necessary.

When I called in late 2011, I remember explaining to the woman on the phone that I had a condition called “Chronic Fatigue Syndrome” and then quickly blurted out “but it’s much worse than it sounds!” The woman on the other end said “that sounds pretty bad as it is!” When I filled out the application I described my current medical condition as, among other things “…moderate to severe Chronic Fatigue Syndrome with significant post-exertional symptoms…” I do have multiple co-morbidities (as I assume you probably do as well) and the management of patients with multiple diseases is their specialty. To be sure, ME/CFS is NOT their specialty. I’ve had to do a lot of explaining of this disorder to my provider and she hasn’t always quite gotten it. But she has listened and genuinely tried to provide the best possible care she can. Which is about as good as any of us can expect at the moment.

I don’t know if it might be worth contacting them again? Emphasize that you cannot get to a doctor, as that really is the only eligibility factor. Maybe ask to be put on the waiting list for your area? Feel free to email me off thread at shadiah_us [at] yahoodotcom.

I don’t know if Dr. P is taking new patients or not, Christine, but I do have an email friend who has been a patient for years so I’ll ask her. As for those GPs turning you away, its shameful. I found my new GP by looking at a website that rates physicians and includes reviews, but I imagine you’ve tried that too. I went to http://www.healthgrades.com and just started searching my area. I’ve seen so many horrid doctors that perhaps the odds were just finally in my favor but I found a good one that way. I realize that requiring one who makes house calls as well would be more difficult. You can definitely weed out the quacks by reading the reviews. I checked out the doctor my former GP’s office recommended and was appalled at what I read, thus leading to my own search. I’m surely wearing you out here but I’ll ask my friend about Dr. P.

Trying again, Christine – from my wonderful friend, who prefers to remain anonymous. She and her husband both have ME/CFS:

The Federal govt. is cracking down on pain medications. “Death by over dose” rates have been climbing at an alarming rate. And we seem to be a country that would prefer to let people writhe in pain than give them pain meds.

Then it varies state by state, and region by region for what is customary practice. Oregon is a strict state, compared to some others. Pain specialists seem to avoid using pain medications, so you have to wonder, what does a pain specialist do? Also, doctors are watched as the Feds get tighter on their rules, so they get edgy, and would rather NOT have to sort out the “seekers”, those who want to use these drugs in a recreational way or sell them, from the real pain patients. How do I know all this? My husband takes pain meds, and he has had real trouble finding a good doctor. He has gone to the Pain Center at OHSU in Portland a few times- a team of doctors look you over from all angles, and make recommendations. If you can get them to recommend pain meds, it’s a step toward finding a doctor to carry out their plan. (They do not prescribe themselves.)

If you find a doctor who will prescribe, it’s pretty common to have to do pee tests, to prove you are taking them. You can only get the scripts on paper, you have to go every 30 days to fill, if you lose your meds, tough luck, you aren’t getting any replaced until the next “Day 1″. I have a friend taking about the same dose of morphine as you, Christine, and a few months ago her doctor started requiring the PEE test, after years of knowing her, and of not raising the dose, etc. It’s the regulations; they have to do what they need to do, in case they are ever charged with the crime of dishing out scripts to “users”.

We have been Dr. Peterson patients since 1991. The office is a bit chaotic, things don’t always get followed up on. Ask for “Joe” when you call- and beg him to be realistic with you about the process. I really don’t know what the new patient policy is, or how many he sees. He is a really great diagnostician, and he has his ways of sorting out “who has” and “who doesn’t have” the Mystery Illness. But if he feels you don’t, he’ll want to find out what IS going on. Overall, he is a GREAT doctor, it’s wonderful to have someone who looks you in the eye and listens. Keep trying to get in…I think persistence would pay off. Don’t call on Tuesdays, that’s the day he sees patients like us. It’s really like the Twilight Zone on Tuesdays- seeing other people walk with the MS like gait, to see their appearance, it’s so familiar! And to hear their stories- it’s your story. Wonderful camaraderie, ha ha.

Finally, it is really hard being sick and having to also fight for yourself so hard. I’m with you, I’d almost rather have something else with name recognition (cancer, MS, AIDS), just to be able to skip over the part about explaining what the illness is (and seeing the eyes glaze over). My sister in law was recently diagnosed with a kind of leukemia- in the months leading up to the DX she sounded a lot like us. Nope, cancer. But after years of not really believing us, she now knows what we mean by fatigue at the cellular level, the brain fog, the muscle and joint pain, the lack of stamina, the wanting to do something vs. really being able to do it. So, I guess it’s good that she finally understands, but I’m sorry she has an incurable cancer.

Nan, thanks so much for going to all this trouble! I really appreciate it. Please thank your friends and I will do as they say, call and ask for Joe.

The story about OHSU pain clinic and drs wanting you to do the pee test before subscribing is something my doctor warned me about that I’m looking at that. It will require me to get down to his office to do so for a pee test. Or I will have to go to OHSU. How? I’m bedridden. Do I need to call an ambulance?

If the test shows you have to little in your test than you get prescribed less if you have too much you will be labeled as an abuser. I have heard from another ME patient who also needed to do this test and she said her CFS doc told her that we ME/CFS patients do not process our Morphine or other opioids the same way as healthy people do and that in most cases the test outcome will be skewed. I’m mortified and so was she.

Her test showed not the amount that she was taking and than you get questions if you’re selling it or sharing it with someone else. Because you do fill your scripts in time so the test should show the right amount, but it doesn’t because our metabolism for processing opioids is different. But who is going to believe you? All the recreational users have come up with every excuse possible so they are weary.

I still have 5 days till my script runs out. I have already emailed the office so that they know in time and maybe we could come up with a solution? I have not heard from them yet. We always communicate per email, it’s what they prefer. Every day that passes I get more anxious and not just because I will have to go cold turkey but also because they make me feel like a junk. Instead I’m lying her powerless and can’t do a thing.

You’re so welcome, Christine. I didn’t have to retype my friend’s message so it wasn’t a big deal. I think I goofed the first time I copied and pasted by putting her words in brackets, which probably messed it up. Worked fine the next try. It was no trouble at all to ask her and I already thanked her. As for the testing etc., it boggles the mind that any of us would have to go through that. I never needed to take a pee test. They aren’t quite that strict in my state yet but perhaps that’s coming. The blood tests were quite expensive though and our insurance had some questions about that. One time I went to my former PCP and the nurse had a fit because I had most of a bottle of Hydrocodone left so why did I need that much prescribed? Its ridiculous. You get in trouble either way, as you said. Good luck! Hope you’ll have better luck with Dr. P too!

In the 17 years I have had FM+ME I have taken 5 different opiates until two and a half years ago I decided to use nutritional supplements to help me get off them. I have been accused of dangerously using high doses of nutritionals but in fact I used dangerously high opiates which caused me to have a serious motor accident and further damage my spine.

My pain control is much better on the supplements than on opiates. I was challenged about this and told that I maybe in “spontaneous remission”. I stopped all supplements for three months and began to deteriorate after three weeks. I had to go back onto oxycodone to alleviate the pain until reestablishing the supplements.

While I took opiates for pain they seemed to make my fatigue, especially PEM worse. In addition they made me impotent
I also believe that the opiates made my pain worse in the long run as when I look back the doses increased and the type of opiate became stronger.

In the clinic where I work part time we try to encourage people with FM to avoid opiates if they can. In fact right now we have 7 with FM (no ME) and none take opiates (however two take SNRI’s and one takes gabapentin) but all take supplements.

Supplements I have taken and currently take.
First I took the advice of Prof Julia Newton (UK) to take magnesium (400mg daily). This stopped about 95% of muscle cramps which I suffered severely, once falling into the road after getting out of the car. The second thing the magnesium alleviated was the massive twitches/contractions which sometimes threw me to the floor. These were worse when I sat down and once threw my face into my dinner plate.

Following success with magnesium citrate I decided to take vitamin D. I was very mixed about this because of opinions gathered from the Marshall Protocol” and various people with ME/FM who seemed to be verifying worsening after taking vitamin D. I read several texts on vitamin D (later becoming a member of the Vitamin D council). After reading much I reasoned that the Marshall ideas were none sense and that at very least higher vitamin D levels would be prophylactic even if I gained no reduction in the symptoms. I began to realize that most people are deficient anyway. My serum levels of 25(OH)D were 45nmol/L (19ng/ml). Which surprised me because I wasn’t averse to sunning in summer.

I started on 5000IU daily. Within two weeks I had no diarrhea. I was about to start a course of probiotics for that but found the vitamin D did the trick anyway. I was really interested in reducing my pain levels, so was a bit disappointed.

After reading Rich vanK’s blogs I decided to follow some of his recommendations. So started on B12 (methyl cobalamin), MTHF, B6, NAC,ubiquinol and zinc. My energy levels shot up. After about six months on this I noticed my pain levels had reduced further and I started exercising and walking.

After a further six months I was much improved and went to work part time. I was still having problems though, I was not sleeping well, I still suffered nocturnal peeing, I still had some wrist-hand, forearm and elbow pain (neuropathy), worse early AM. and my ability to retain information was still bad. I still had some morning stiffness and tended to stumble until after my shower. I also reacted with heightened pain and tremor to perfumes and some solvents.

After more thinking and discussion with colleagues I decided to be the guineapig for sublingual glutathione. I found this to reduce my reactivity to the chemicals. I tolerated it well but some others we tried it on did not (MCS sufferers).

I am happy to see this survey. I was per scribed oxycontin in 2000 by a Dr. who had ME/FM for 25 yrs himself after I tried many combinations of over the counter pain meds. After the initial feeling of stoned went away the pain control was wonderful & allowed me to live my new normal life. I had to be cautious to not end up in fatigue from overdoing it. The timex watch to monitor my aerobic/anerobic levels really helped to control this.
I am still on a lower dose of OxyNEO with breakthrough oxycodone. The latter I have reduced due to forgetting to take it & then realizing I was still comfortable. I am also take supplements, attend a hot 93 degree F. pool program, & monthly massage therapy. One of my supplements has gluthatione & cysteine. I have tried to stop it many times in the past 13 years due to cost, but end up sinking into fatigue, & have to start it again. It also reduces pain.
I am an opiate success case, & due to having a medical back ground & know the addictive qualities of this med. I am thankful I don’t experience these problems, but know if I had to stop them I would have to be careful & need medical assistance.

Thanks Cort and too everybody who posted. It helps a lot to read others experiences that are so similar to mine. I was off opiates for 15 months and took a low dose for one month and build up an insane tolerance right away. My opioid receptor’s seemed to fill right away. When I am not in pain (while on opiates) I feel 80% normal. After fifteen months off pain meds I have lost 50 ponds and I am completely de-conditioned. Getting help is nearly impossible. To all out there who are in this struggle, my hat ( I do not wear a Hat) goes off to all of you.

I always built up a quick tolerance to opiates that just escalated. This made me look like a drug abuser. We are all filled with Stigma to be a good patient. I really do have PSTD from my interaction with Doctors who do not believe in M.E. and that just makes it worse.